Latest / Living with Parkinson’s | Bryce Perry / Your Parkinson’s Questions—Answered Honestly and Hilariously

Transcript

Your Parkinson’s Questions—Answered Honestly and Hilariously · Living with Parkinson’s | Bryce Perry

• 0:01
  They told him he had five good years left.
• 0:04
  That was 15 years ago. He's still standing, still
• 0:08
  speaking, still living. This is living with Parkinson's,
• 0:12
  The good, the bad, and the reality.
• 0:15
  A podcast about what happens when life throws you something
• 0:18
  incurable and you fight back anyway.
• 0:21
  Hosted by Bryce Perry, diagnosed at 4015.
• 0:25
  Years into the battle, This is the truth behind the tremor.
• 0:29
  Let's begin. Hey everyone, Bryce here.
• 0:36
  You know, every time I read through the comments on this
• 0:39
  channel, I am floored by the honesty, the curiosity, and the
• 0:43
  absolute brilliant questions that you throw at me.
• 0:46
  Some of them actually stop me in my tracks.
• 0:48
  And I mean seriously. Well, today I'm answering the
• 0:50
  questions that come up again and again and again.
• 0:52
  And if you're wondering about it, I guarantee you someone else
• 0:55
  is. So let's dive into this and
• 0:57
  let's get real. Well, welcome back to the
• 1:01
  channel. Thanks to all my loyal viewers
• 1:04
  and for coming back. And if you're new here, my name
• 1:05
  is Bryce. And this is doing life today.
• 1:08
  And it's home of living with Parkinson's.
• 1:10
  The good, the bad in the reality.
• 1:11
  And this is your spot for strength, hope and support.
• 1:13
  And there's no sugar coating here.
• 1:15
  Just real talk and some laughs along the way.
• 1:17
  So let's get into today's Q&A. Again, I've taken these right
• 1:21
  out of the comments. So the first question here is
• 1:25
  from Robin Robin's from Australia.
• 1:27
  And the question is what's the difference between primiprexal
• 1:30
  and L dopa or levodopa? Well, Robin, that's a fantastic
• 1:34
  question. And honestly, it's one that I
• 1:36
  wish somebody had broken down for me when I was first
• 1:39
  diagnosed. And I get so many questions like
• 1:42
  this, so here we go. So here's what real life, here's
• 1:45
  the real life rundown. Right when I got my diagnosis,
• 1:48
  my neurologist put me straight onto levodopa.
• 1:50
  OK, no pramaprexil at the at the doprexil and at at all in the
• 1:56
  beginning. Now levodopa or L dopa is the
• 1:58
  gold standard, right? Your body converts it directly
• 2:02
  into dopamine. So the effect is real and most
• 2:05
  of the time it's pretty noticeable.
• 2:07
  Matter of fact, that's one of the ways that they confirm a
• 2:09
  diagnosis is if you take levodopa and it actually takes
• 2:13
  away your symptoms or makes them feel better.
• 2:15
  That's a guarantee that you have Parkinson's.
• 2:18
  Anyway, a few months later after I started the levodopa, when my
• 2:21
  symptoms, not that they were getting trickier, it was like we
• 2:25
  were again trying to find this perfect mix of taking the least
• 2:30
  amount of levodopa that's going to last the longest amount of
• 2:34
  time. So what we were finding is that
• 2:36
  my levodopa was it was taking a while to kick in and it wasn't
• 2:41
  lasting very long. So that's when my doctor added
• 2:46
  the primaprexole to the mix. But I didn't, I never took
• 2:49
  Primaprexo by itself. It's always been in combination
• 2:51
  with the levodopa for me. Now, primaprexole is the
• 2:54
  dopamine agonist or AG AG, I can never say that word agonist,
• 3:00
  right? And the meaning meaning it's
• 3:02
  sort of like mimics dopamine in your brain, but it doesn't
• 3:05
  actually become dopamine. You know, I still remember the
• 3:08
  first time I tried the two together, I felt like my body
• 3:10
  was getting like a software update.
• 3:12
  You know, I was at a family dinner and halfway through I
• 3:14
  realized my hands weren't shaking as much, right?
• 3:17
  And they were. And the the levodopa was kicking
• 3:20
  in sooner and it was seemed to be lasting longer, at least for
• 3:23
  me. And that's kind of what I think
• 3:25
  it's actually supposed to do. I remember somebody saying, Hey,
• 3:28
  you're not doing your jazz hands tonight or, or something that
• 3:31
  like like that. It was like, you know which by
• 3:35
  the way, your jazz hands became a running joke in my house,
• 3:38
  right? But for me, levodopa has always
• 3:40
  worked. It started working quickly, but
• 3:43
  the effect wouldn't last that long, right?
• 3:46
  So Primipixels seem to stretch things out.
• 3:48
  It made the ride a little bit smoother.
• 3:51
  But yes, it also made me super sleepy sometimes.
• 3:54
  And that's one side effect I didn't expect.
• 3:57
  You know, if you ever catch me dozing off mid conversation, you
• 4:00
  know why. So my Primaprixole right now, I
• 4:03
  take my first 3 doses of levodopa and I take my first
• 4:07
  dose as soon as I wake up. And then I'm, I'm in three
• 4:10
  hours. So 3 hours later, 3 hours later.
• 4:12
  Example, if I wake up at 6:00, I take my my meds at 6912, right?
• 4:20
  So here's the big lesson. You have to be part of the
• 4:24
  conversation with your doctor. I know I say it and I'll say it
• 4:26
  again. I ask, I ask why a lot more than
• 4:29
  I used to. It turns out that not, it's not,
• 4:32
  it turns out that not being difficult, it's not being
• 4:34
  difficult. It's but it's self advocacy.
• 4:37
  You have to, you know, again, talk to your doctor, ask the
• 4:41
  questions. If you're not feeling right, if
• 4:43
  it's that your, if it doesn't feel like your medications
• 4:45
  lasting that long or or you're it's running out too quickly,
• 4:49
  journal it, make notes, watch the trend, talk to your doctors,
• 4:53
  talk to your whole healthcare team.
• 4:55
  And here I'll throw in a little park Bryson and some for you
• 4:58
  with Parkinson's, there is no set it and forget it.
• 5:01
  It's more like a set it, watch it and keep a back up plan in
• 5:05
  your pocket. All right, that was the question
• 5:08
  there. So thanks.
• 5:09
  That was a great question. Again, taking these right out of
• 5:11
  the questions that have been in the comments in the YouTube
• 5:14
  videos. So, so here's question #2 and
• 5:18
  this is from Kelly. Kelly said, how do I get past
• 5:21
  the doom and gloom and get out of bed when Pristic isn't
• 5:26
  working? Well, let me see like this,
• 5:29
  Kelly. Anyway, thank you for your
• 5:30
  question. Thank you for watching, thank
• 5:31
  you for being a viewer. Kelly, you're not alone here.
• 5:35
  You know, I can't tell you how many mornings I've stared at the
• 5:38
  ceiling thinking, Nope, not today.
• 5:42
  You know, the mental health piece of Parkinson's is the real
• 5:45
  deal for me. Depression and anxiety, it crept
• 5:47
  in very quickly after diagnosis. And what helped me was this, you
• 5:54
  know, and OK, let me be real for stick, you know, didn't work for
• 5:58
  me either. I tried a couple of different
• 6:00
  antidepressants before I found one that actually took the edge
• 6:03
  off. And sometimes it's about trial
• 6:05
  and error. And sometimes what helps wasn't
• 6:08
  even the medication. It was getting out of bed and
• 6:10
  opening the blinds. And I started challenging myself
• 6:13
  to sit up and swing my legs out of bed and put on my socks.
• 6:17
  And, you know, the socks never matched.
• 6:19
  But hey, I got up and one morning my daughter, I remember
• 6:22
  she walked in and she saw me still in bed and and she said,
• 6:25
  Dad, are you getting up today? And which was very unusual if I
• 6:30
  was up before my daughter, I mean, sorry, my daughter was up
• 6:33
  before me. I said, you know, I'm working on
• 6:37
  it. And you know what she did?
• 6:39
  She brought me a a coffee cup of coffee and she sat beside me and
• 6:42
  she told me about her day and her last night and what she had
• 6:45
  done and, and whatnot. And I realized in that moment
• 6:49
  the best medicine was just having someone there, even if I
• 6:53
  still have felt like a zombie. And you know what?
• 6:56
  Humor helps too. I say that a lot.
• 6:58
  But now I say, let's see what kind of circus act my body is
• 7:02
  planned for today. And sometimes the tent falls
• 7:04
  down and sometimes I'm the star performer and sometimes it's
• 7:09
  just not there. You know, some days getting out
• 7:13
  of bed is the win. The rest is the bonus points.
• 7:17
  There's a price of them. Some days getting out of bed is
• 7:20
  just the win and the rest is just the bonus.
• 7:22
  But anyway, thank you so much for that question.
• 7:24
  And and you know, I read, I read and I answer every single
• 7:30
  comment in on YouTube, every one of them by myself.
• 7:34
  Sometimes I'm a little behind because there's a lot, but I
• 7:37
  encourage them. I love them.
• 7:38
  This community is amazing. I love the fact that people are
• 7:41
  jumping in and, and and encouraging each other and
• 7:44
  summer trying to even answer questions and and give their
• 7:46
  opinions on it. And it's so amazingly and
• 7:48
  awesome and wonderful. And if you are new here and you
• 7:51
  haven't subscribed or maybe you've been watching some, you
• 7:53
  know, watching videos and haven't subscribed, you know
• 7:56
  what, why not subscribe? It's real talk.
• 7:58
  It's real, right? And in the comments, you know,
• 8:01
  put your questions down like all the time, all the videos, if
• 8:04
  there's something that doesn't make sense, if you're
• 8:05
  questioning something, feel free to write them down.
• 8:07
  And you know what? And also in the comments of this
• 8:10
  video, I'd love to know if you like this, like if this is
• 8:13
  something that you would enjoy. And maybe I could do this on a
• 8:15
  weekly basis because I have so many questions and I've been
• 8:18
  thinking about doing it for a while, But I can just grab some
• 8:20
  random, you know, grab a bunch of questions for the week maybe
• 8:23
  or the month before and kind of go see if we can answer them on
• 8:28
  on the air. So anyway, hope you're enjoying
• 8:30
  this so far. And if you are, hit that like
• 8:32
  button and share with somebody that would help the algorithm
• 8:35
  and help us get this video out to more people that need it,
• 8:38
  right? Because there's a lot of people
• 8:39
  that need this. So here's question #3 and this
• 8:46
  was anonymous. Anyway, my husband watches me
• 8:49
  struggle and asks if I took my meds and that ticks me off.
• 8:54
  OK, so whoever dropped that comment, you are my spirit
• 8:58
  animal. I can't count the number of
• 9:00
  times Carmen's asked, did you take your meds?
• 9:02
  And I wanted to say, did you take your patients pill today?
• 9:04
  You know, but here's what I've learned.
• 9:06
  Most of the time those questions aren't about the meds at all.
• 9:09
  They're about fear. My wife, you know, my kids, my
• 9:11
  parents, they're scared of, of, of what they're seeing and they
• 9:15
  want to fix it, right? But sometimes it comes out as
• 9:18
  like a pop quiz on my medication routine and that drives me
• 9:21
  Batty. O what helped us was was this.
• 9:25
  This was really this. Now get ready.
• 9:27
  You got to write this one down. This is a very big one.
• 9:29
  You got to write this down. Here it comes, honest
• 9:32
  conversations. You know, one day I just said,
• 9:36
  you know what, Carmen, if you want to help, just sit with me
• 9:38
  or bring me a coffee. But don't interrogate me like
• 9:41
  I'm on a game show. We even created a code, a code
• 9:44
  word. If I say autopilot, it means I'm
• 9:47
  struggling, but I don't want to talk about it right now.
• 9:49
  It's not perfect, but it helps. So we have a safe word anyway,
• 9:54
  you know, And you have to remember something.
• 9:57
  They're saying that because they care, right?
• 9:59
  We're all learning a new language together.
• 10:02
  Have you ever learned a new language?
• 10:04
  I, I, I haven't because I think it's too difficult.
• 10:06
  Well, this is the same thing. We're trying to figure this out.
• 10:09
  And just as much as we're trying to figure out our loved ones are
• 10:12
  care partners are trying to figure it out as well.
• 10:14
  And you know what? Let me say this to the care
• 10:16
  partners out there as well. The inner circle.
• 10:19
  And then I always forget to say this, but we have a private
• 10:22
  community of people that are helping each other, talking to
• 10:23
  each other. We're doing live calls.
• 10:25
  I do live call with everybody there once a month and there's
• 10:29
  care partners in there. So if you're a care partner, the
• 10:31
  inner circles for you to come on in and be part of the community.
• 10:34
  And if you have, we have direct questions.
• 10:36
  I mean, they are getting deep in there.
• 10:37
  It's pretty awesome. So love to see you there.
• 10:40
  If you want more information about that, there's a link in
• 10:42
  the description below for the Inner circle.
• 10:44
  And you know what, come and come hang out with me and us.
• 10:46
  It's an amazing group. I just love them.
• 10:49
  OK, can I give you a pricism for that one?
• 10:53
  Well, let's give you 1 anyway. How about this sometimes.
• 10:59
  Did you take your meds? Really means I love you and I'm
• 11:01
  scared, but I still reserve the right to roll my eyes.
• 11:05
  There you go. OK, let's look at this question
• 11:08
  here. And again, this was I think this
• 11:10
  was anonymous, this, this one. But this one said travel,
• 11:12
  flights and Parkinson's. How do you manage, right?
• 11:17
  Well, travel with Parkinson's is let's call it an adventure.
• 11:21
  You know, imagine playing chess while riding a roller coaster
• 11:23
  with your hands tied behind your back.
• 11:25
  That's how I feel. That's right for me.
• 11:27
  But here's my routine. I always pack twice the meds
• 11:31
  that I think I'm going to need, half in my carry on and half in
• 11:34
  Carmen's purse or half in, you know, wherever it is, like in my
• 11:37
  briefcase or my laptop bag. I keep a printed schedule.
• 11:41
  I set alarms because time zones make things weird.
• 11:45
  They make things weird. I've heard of people I don't
• 11:48
  need this yet, but people call ahead, call the airline, ask for
• 11:51
  wheelchair assistance, you know, even if they, even if you think
• 11:54
  that you're not going to need it, Why not?
• 11:56
  Why not? Because, you know, one time, you
• 12:00
  know, I thought I could power through and I ended up stranded
• 12:02
  at gate 49 feeling like I just completed an Olympic event in
• 12:05
  slow motion. You know, I hate it though, some
• 12:08
  of those ones. But I'm really trying to like
• 12:09
  power through. I'm trying to like push myself.
• 12:12
  I'm like, you know, at bedtime. But no, you know what, I just
• 12:14
  want to get out of the airport. So I'm going to get down there,
• 12:16
  grab my luggage, get in there, grab a water, get in the the
• 12:19
  Uber or the cab and then I'll take my meds.
• 12:22
  And I remember I was, it was this long walk and I thought
• 12:24
  that it was like a, it's an airport.
• 12:27
  It can't be that long. And thanks, you know, I feel
• 12:29
  like I've been walking for like a mile and halfway through, I
• 12:31
  literally had to stop and sit down.
• 12:33
  And I'm like, that's frustrating, right?
• 12:35
  So plan ahead, prepare yourself, and don't try to push through
• 12:39
  all the time. It's not a sign of weakness.
• 12:41
  It's kind of smartness. Smartness.
• 12:44
  There you go. You know, my record for airport
• 12:47
  security is 14 minutes because my pill bottles, my snacks, my
• 12:50
  gel packs, they all set off alarms, you know, wherever
• 12:53
  possible. And by the time I get to the
• 12:55
  gate, I need a nap and a snack. I always make a joke that I have
• 12:59
  the cleanest laptop in the history of mankind.
• 13:01
  I don't know if I look like I'm a bad guy.
• 13:05
  I don't know. But every time I go through
• 13:07
  security, bar none, every time in an airport, my laptop's
• 13:11
  getting that rubbed down. You know, it's getting clean.
• 13:13
  So it's like I either have the cleanest laptop, you know, on
• 13:16
  the planet. It's, it's crazy, but here's a
• 13:19
  tip, here's another trick that I've, that I've done, and I've
• 13:22
  done this lately. I now I carry a letter from my
• 13:24
  neurologist and the reason I did that as a security card.
• 13:27
  One time he tried to compensate my pill, my pill case and he's
• 13:30
  and, and I said, trust me, I'm not trying to smuggle anything
• 13:32
  exciting unless you're really into Cardopa, right?
• 13:36
  So I actually it was a little bit nervous, nervous for me and
• 13:40
  because I also now use my pill timer caps, I just have a letter
• 13:45
  in there. You know, it's from a
• 13:46
  neurologist that says what I have, what I take, what it looks
• 13:49
  like. And that way if there's any
• 13:51
  other question, at least they can, they can phone them and get
• 13:54
  a hold of them. But I guess the bottom line is
• 13:55
  this is that travel isn't easy, but with planning, you can still
• 13:59
  have adventures, just maybe not the run to catch your flight
• 14:03
  kind, which I'm learning and I'm learning as I go.
• 14:05
  So I don't know. Did you get a braces on that
• 14:08
  one? Always pack double the meds and
• 14:11
  half the stress and you'll use both.
• 14:14
  How do you like that? I think that was a pretty that
• 14:16
  was a pretty good one. And again, I hope you're
• 14:18
  enjoying this. I hope you like liking the way
• 14:20
  this is going. But like these questions, you
• 14:22
  know, are the reason I love this community.
• 14:24
  You know, none of us sign up for Parkinson's, but we ended up
• 14:27
  here together. I always say, you know, that you
• 14:29
  know, welcome to the club that you didn't sign up for and none
• 14:32
  of us want to be here. But your honesty, it makes all
• 14:35
  the difference. And for me, I think for me and
• 14:37
  for each other. So what do you want to know
• 14:40
  next? All right, drop your questions
• 14:41
  in the comments. I really do read every single
• 14:43
  one and I answer every single one.
• 14:45
  And I love making videos for you.
• 14:47
  And I love to answer what you want to hear.
• 14:49
  And if you like this format, I'd love to do more.
• 14:51
  Maybe it's something we could do on a weekly basis, but let me
• 14:54
  know, please. And if you want to go deeper, I
• 14:56
  mentioned it before, join the inner Circle community.
• 14:58
  There's a link in the description below.
• 15:01
  And you're always welcome. OK, Remember, Remember, we're
• 15:05
  all just figuring out how to keep doing life today together
• 15:10
  and I'll see you soon. Parkinson's may be part of your
• 15:16
  life, but it doesn't get to define it.
• 15:18
  Thanks for listening to Living with Parkinson's, the good, the
• 15:22
  bad, and the reality. If this episode moved you,
• 15:25
  helped you, or reminded you you're not alone.
• 15:28
  Share it with someone who needs to hear it.
• 15:31
  Want to go deeper? The Inner Circle is waiting.
• 15:34
  Monthly Zoom calls, 24/7 community, and a Direct Line to
• 15:37
  Bryce. You'll find the link in the show
• 15:39
  notes. Until next time, keep showing up
• 15:43
  and keep doing life today.